I agree with NoTellin that this is like a full time job. Managing behavior plans, medication (or non prescriptions), and school. School alone the equivalent of part time job. The psychiatrist, the teachers and therapists are all on the periphery of this. The first thing you should do is be organized. Get a notebook (a BIG one) and start documenting everything. Kepp all correspondance and evaluations and progress reports in that notebook. She's right about the evaluations, you will need them. I just priced a full private neurospych for my daughter and it was 50.00 out of pocket. We got school (fortunately) to pay for the additional testing we need so far. I've already been doing this battle since pre-K and my daughter is in 7th grade . I did it with an advocate though, a large expensive in itself.
I'm not trying to discourage you, just be honest. You do need to work with school and the friendlier the bettter, but they are only going to think about money and not going to offer what your child needs, only what they are willing to provide. This doesnt mean what they CAN provide, just what they will voluntarily provide.
[QUOTE=areeder78]I did a lot of reading and found out about the laws and the fact that I could get help if I just waited until he entered public school system. However, I did find in my reading that most Dr's want to rule out other problems. [/QUOTE]
I think that the role of the school system may be unclear. ADHD is a medical diagnosis. It needs to be treated as such.
[QUOTE=areeder78]
I literally had to pour my heart out on the table to explain to both principals and the guidance counselor everything my son had been through since he was a young baby. This seemed to work to prove that we are pro-active in our son's behavior and care. I feel it should not have taken this for them to see he truly had a problem. [/QUOTE]
Again, I do not feel that this is the school's job. He needs to be taken care of within the medical system first and then go through the school's system (see NoTellin's excellent post). I try to stay out of the school's convoluted system by making sure my son's medical condition (ADHD) is taken care of medically so that he can function as normally as possible.
[QUOTE=areeder78]
Now, my biggest problem is that even with the diagnosis, I don't feel that I'm any closer to the finish line.
[/QUOTE]
Unfortunately, there is no finish line with ADHD. It is a life-long disorder that some people do learn to compensate for eventually, depending also on the severity.
[QUOTE=areeder78]
However, when I asked what was next, the Ped (who was not supposed to be Pro-Drugs) starts mentioning Meds. I told him I wanted to approach non-med at first and work towards that if necessary. He really didn't tell me a treatment plan or suggest one. I don't understand.
[/QUOTE]
The physician may believe that in your son's case there isn't an either/or option. He may firmly believe that the severity of his ADHD warrants medication. Please research the use of medication in REAL studies (not random internet sites). You will understand why most physicians see medication as the first line of action in severe cases. They work.
[QUOTE=areeder78]
If I wanted to do all this alone, I would go back to school for a medical degree, right??
[/QUOTE]
Unfortunately, yes. Many people on this site have mentioned that they now know as much or more than their physicians. It's entirely different to live with ADHD and to know it only theoretically. You will have to become an expert on the diagnosis. I take it as a given that the school professionals know only the most basic facts about ADHD and it is my job to (gently) educate them about my son.
[QUOTE=areeder78]
The downside to medicating is that we are limited to what my son can take. Apparently most of the common meds have warnings about seizures so he cannot take those.
[/QUOTE]Hello fellow parents!!
I have a 5 year old son who was diagnosed today with ADHD.
A little insight about my son is that he already has a pre-existing seizure disorder that is being treated with 10 mL of Trileptal daily. This is in addition to the numerous ear infections that caused 3 separate ear tube surgeries and an adenoidectomy. He is also in Kindergarten and has just completed about 8 weeks of school as of yet and has already been sent home early twice and suspended once during this time. I was originally approached last fall by my son's preschool teacher about his behavior and learning problems due to his behavior. She told me that I should go ahead and see what could be done to try and avoid a rough start at Kindergarten. However, after many phone calls and a lot of research, no one wanted or would do anything about a hyperactive 4 year old that didn't seem to be a threat to others. I did a lot of reading and found out about the laws and the fact that I could get help if I just waited until he entered public school system. However, I did find in my reading that most Dr's want to rule out other problems. Before today's assessment, I had already gotten a clean bill of health this year on hearing problems, lead paint exposure and blood/sugar levels.
Let's just say I already knew what my son's problem was. After the first two weeks of school my son was already exhibiting behavior problems at an intense level. I emailed his teacher to let her know that I was aware that he had a problem and asked for help to proceed. It seems that she forwarded the information to the school guidance counselor and it sat there. Within the next week or two, the behaviors worsened and caused my husband and I to make a visit to school when he was suspended. I literally had to pour my heart out on the table to explain to both principals and the guidance counselor everything my son had been through since he was a young baby. This seemed to work to prove that we are pro-active in our son's behavior and care. I feel it should not have taken this for them to see he truly had a problem. They were not much help except to tell me that he would need a diagnosis for them to do anything to help and that I would have to seek out a Dr to get that. Upon calling my insurance, I found that help was few and far between and the good help was out of reach. I ended up choosing a Pediatrician that specialises in Child Behavior at the local Children's Hospital 50 miles away. This is who has diagnosed him ADHD.
Now, my biggest problem is that even with the diagnosis, I don't feel that I'm any closer to the finish line. I do know I have my ticket to safeguard my son under the state laws for educational purposes. However, when I asked what was next, the Ped (who was not supposed to be Pro-Drugs) starts mentioning Meds. I told him I wanted to approach non-med at first and work towards that if necessary. He really didn't tell me a treatment plan or suggest one. I don't understand. I asked what to do and he just fizzled it seems. When I mentioned the local RIP program, he came back to life and said it was a great program for my son and for my husband and I. So now I guess I go to the RIP program or get a Psychologist?? I'm at a loss. If I wanted to do all this alone, I would go back to school for a medical degree, right?? The downside to medicating is that we are limited to what my son can take. Apparently most of the common meds have warnings about seizures so he cannot take those.
Any words of wisdom on which direction I should steer into next?? Thank you so much for reading and any advise you can offer.
Hi, I feel your pain!
I just posted about how frusterated I was about spending time and money on people who didn't specialize in ADHD..
Good for you for ruling out other health problems, I already have a diagnosis and never even did that (in the process of getting it done now)
I think I would really listen to others on here and bypass the psychiatrist and psycologist and go to the neurologist. I'll PM you tomorrow w/ the websites I looked up earlier today and printed out specialists in my area...it's 12:13 am and I really need to get to bed! I feel that the psychiatrist/psychologist didn't really do or reccomend what they should have now that I have done some research it is making me very angry at all the time and money spent!
The seizure medication may make it more difficult, but i wish I had started w/ natural supplements anyways, even though my dd is doing fairly well on meds.
Good luck
Morgan
If he has behavior problems at an "intense level," if you chose the non med route, it will be a long rough uphill climb. Lots of stress. This means getting a private comprehensive evaluation with educational testing and recommendations for classroom management. Preferably the doctor observes at school and talks to the teacher and school psychologist. This will probably not be covered and will run 00. Then you take this report and request a Comprehensive Evaluation for special education services from the school. In writing. If you skip the private evaluation report you run the risk of your child being found ineligible for SE or being found eligible, but only under the Emotiionally Disturbed category, which is very undesirable. Then the school evaluates and tells you if he meets the criteria for SE. If the answer is yes, he gets and IEP and services that the IEP team deems needed. You hand partial decision making power over to the team. You are no longer the sole decision maker. You can always hire an education advocate to get services, if needed. This involves lots of meetings at the school, ongoing, during the child's entire education. I seem to meet with the school every two months. If you chose not to medicate, this is your path. If you don't don't medicate AND don't enroll your child in SE, you will be pressured.
Pouring your heart out isn't going to get you anywhere. You need to read your state's Special Education Code, arm yourself with knowledge and become an advocate for your child. This is business, not personal. This is like having a second job. You might want to read From Emotions to Advocacy first. Learn how to play the game, because that's what this is all about. This is about money.
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